Supporting Individuals and Families to
Self Direct Their Lives Through the
Maryland New Directions Medicaid Waiver

Self-Determination or Lost Lives

The failure of our federal statutes and regulations to adequately address the issue of the common humanity of individuals with disabilities has resulted in the substitution of human services and human service environments and programs for real life and high purpose. Individuals with disabilities have become human service subjects within a system of long-term supports that has no expectations that common life goals based on universal human aspirations can add great depth to the notion of addressing the health and welfare of individuals with disabilities.

Present public policy inadvertently supports lives lost to programs and rules that deny or ignore our common humanity, our common aspirations and dreams, and our common sense of responsibility to become contributing members of this society. Our present public policy forces individuals with disabilities into lives of personal impoverishment and frequent loneliness.

The purpose of public funding must move to a more noble goal of assisting individuals achieve lives of high purpose deeply embedded in their communities, engaged in meaningful relationships and pursuing both economic and spiritual goals.

The History and Meaning of Self-Determination

The promise of self-determination from its inception was rooted in increased quality, increased power for individuals with disabilities, increased status within the community for these same individuals and, at the policy and organizational level, a fairer, more equitable distribution of public funds. It was just over a decade ago that the first demonstration on self-determination in New Hampshire began with a grant from the Robert Wood Johnson Foundation. The two populations included in this initial pilot were individuals with intellectual disabilities and individuals with acquired brain injury as well as with a small number with concomitant psychiatric disability.

The original purpose outlined the "harm" that resulted from typical human services for these populations. Self-determination was not some form of rugged individualism but rather recognition of our inter-connectedness and shared vulnerability. This included loneliness, isolation and the powerlessness experienced when public dollars are out of the control of individuals with disabilities and families.

This fundamental shift in power was predicated on the human service system adopting structural changes that would facilitate and hasten the shift in power necessary for self-determination to become a reality for tens of thousands of individuals presently served and for those tens of thousands currently awaiting public dollars for support. At its heart the self-determination movement was committed to obtaining better value for the dollars currently expended. Self-Determination then, under this rubric, became organized around a set of principles rather than a set of human service interventions or environments. These principles were not human service categories and tried to capture both the political significance of this change and the implications for individuals at a very personal and transformational level:

• Freedom, the opportunity to choose where and with whom one lives as well as how one organizes all important aspects of one’s life with freely chosen assistance as needed;
• Authority, the ability to control some targeted amount of public dollars;
• Support, the ability to organize that support in ways that are unique to the individual;
• Responsibility, the obligation to use public dollars wisely and to contribute to one’s community.
• In 2000 at the request of individuals with disabilities, The Center for Self-Determination, headquartered in Ann Arbor, Michigan, added Confirmation, the recognition that individuals with disabilities themselves must be a major part of the redesign of the human service system of long term care.

Since 1993 when a small cadre of 45 individuals with truly significant disabilities began this revolution, self-determination has spread to a majority of states and affects tens of thousands today. Its growth continues unabated as federal agencies line up to begin revamping their rules and regulations. Both the Centers for Medicaid and Medicare Services (CMS) in the Department of Health and Human Services and the Social Security Administration as well as the Substance Abuse and Mental Health Services Administration are all providing support for this fundamental re-organization of supports to people with significant disabilities.

Night and Day

In 2003 Ricky W. a man with intellectual disabilities who lived for many years in a state institution, moved into an apartment in Hartford CT that was in a poor and unsafe neighborhood. That was all he could afford with his meager Social Security benefit. Medicaid funds would not help supplement his room and board costs. Returning to his apartment from the store he was confronted by four teenagers who beat him to death with soda bottles. In that same state last year Richard M. who lived at the same institution for thirty years without even having a visitor made plans to buy his own condo. Richard was labeled profoundly disabled and autistic. He does not use speech. But the principles of self-determination were used eight years ago to surround Richard with a circle of support and long term allies. Control of a very modest budget was obtained. Friendships and commitments were fostered and developed. Richard has a life and a future. His total costs are much less than similarly disabled persons.

Recently Temple University created a video of three stories of self-determination including Richard’s. In that video, Everyday Lives, Carolyn is also featured. She uses a wheelchair and leads the committee in the greater Philadelphia area to bring self-determination to more and more individuals who experience disability. She is also captured celebrating with her other "family" singing in a house of worship.

In Pennsylvania as in virtually every other state in the U. S. tens of thousands of individuals with disabilities languish in institutions, live in inadequate or unsafe housing and remain personally impoverished. Yet in over 35 states people with disabilities and families are either exercising self-determination or the state is planning to implement self-determination. The revolution is underway. In Florida the Social Security Administration recently granted a new waiver to the income and asset limitations required under current Social Security benefits in order to encourage increased earnings and promote safe and affordable housing as well as increased opportunities to work or engage in self employment. This is being done together with a unique Medicaid Waiver as well where families and individuals get more control over the resources. Individuals and families are free to hire family members, friends, neighbors and fellow church members or anyone with a knowledge and appreciation of the person with a disability. People live in their own homes or share homes with friends. They are no longer "placed" in human service substitutes for community.

The System of the Future

The design of the new system requires three essential elements:

Individual budgets which represent the translation of the person’s hopes and dreams into a budget document controlled by the person/family with assistance when needed.

Independent assistance or brokering which is the provision of unbiased and competent advice and support for the person with a disability in designing and carrying out the life plan and budget provisions.

Fiscal Intermediaries which are organizations or individuals who provide financial assistance with bill paying, accountability for public funds, taxes and benefits as well as other types of financial assistance that may be needed.

These system re-design features make it possible for any person with a disability, no matter how significant, to benefit. There can be no exceptions to the restoration of full citizenship to individuals with disabilities.

The system of the future for long term care is now moving to increased flexibility with public Medicaid funds for long term support which allow more creativity with public dollars and, with the advent of the first dual Medicaid and Social Security Waivers in Florida, it is hoped that encouragement for working and self employment as well as the creation of targeted savings accounts, hitherto prohibited under federal regulations, will become more commonplace.

The Perfect Storm

The demographics of the population of people with disabilities so clearly indicate that waiting lists of un-served or partially served persons numbering in the hundreds of thousands across the county is simply the tip of the iceberg. During fiscal year 2000 over 700,000 individuals with developmental disabilities, to use just one disability example on a national basis, lived at home with a family caregiver over the age of 60. This same year almost 928,000 individuals nationally lived at home with a family caregiver between the ages of 41 and 59 years. This represents 35% of all those living at home and means that the states will have an even larger cohort coming behind the 700,000 currently living with an aging caregiver at home today. This fact holds true for virtually all disability populations.

When the increased competition for scarce Medicaid resources-especially for a rapidly aging population-is factored in, the crisis will only deepen. One of the fastest growing segments today among the elderly population are those over the age of 85. As the population of America ages and eventually moves from 12.5% to 20% of the entire population, the cohort of adult children who today account for 80% of their support, only increases by 7%.

Together with a quickly shrinking workforce it is clear that business as usual will no longer suffice. While short-term monetary increases are necessary to keep the current system from collapsing, longer term re-thinking of the system of long-term care is necessary today.

Each of these three storms—increasingly scarce Medicaid resources, the demographics of the young disability and elderly populations, and the shrinking workforce—will very soon converge to create the perfect storm and rock the entire long term care disability system.

This is not to suggest that self-determination can ever hope to carry this burden alone. Self-determination is not a magic bullet and it requires careful and thoughtful re-design of the present system. However, it remains one of the few advances in the field of disability to demonstrate cost efficiency as well as increased quality. States and projects report current costs at or below that of typical human services. With the advent of "The System of the Future" it is possible to hope that with more individuals entering the work force, remaining out of expensive institutional settings, getting better connected to their communities and entering more long term committed relationships, costs will decline while quality soars. The original demonstration over 12 years ago with 45 individuals saved $300,000 annually.

Re-Thinking Quality

Self-determination requires a fundamentally new foundation for establishing quality and quality assurance systems in the field of long term care and behavioral health. The goal of the self-determination movement has always been to assist individuals with disabilities to craft a meaningful life in their communities, rich in relationships and deeply connected to their communities and the world of business and commerce.

Some contemporary quality assurance systems, depending on what public policy choices are made, may be adequate for the first step in this revolution—supporting control of human services by individuals with disabilities and their freely chosen allies. This is so because control of and satisfaction with the services or supports are seen as the goals of this first step. Therefore it still makes sense for many in the quality assurance world to continue to rely on levels of satisfaction with services or supports as the primary foundation for quality assurance. There are major points of agreement on the need to shift control of a targeted amount of resources directly to the person with a disability/family. There is a new awareness of the role responsibility plays with this freedom to choose providers and services as well.

Both approaches raise the issue of the very purpose of public funding. Self-Determination takes the position that this purpose must be related to a person with a disability having a purposeful life, having the ability to seek the same goals that all others have related to personal relationships, membership in the community, and establishing an economic and spiritual future. The problem with contemporary public policy in this view is that there are no high expectations for individuals with disabilities. In truth, there are no expectations beyond satisfaction and "choice" even in systems adopting "control" of resources by individuals with disabilities. Human services have remained the goal and control of those services has become the foundation of self-directed services and supports. As a result self-direction measures the adequacy of the services, the person’s control of these services and the person’s satisfaction with them. Admirable steps in a new direction. Self-Determination sees supports and public dollars as means to an end not an end in itself. .Lives of high purpose require a deeper foundation.

Once we move from evaluating the adequacy of and control over services and supports to the goal of crafting a meaningful life (self-determination), we will have to move from simply evaluating services to evaluating lives. We will move from simply addressing the adequacy and satisfaction as well as control of the services to the quality of personal lives. And this means that we have to fundamentally change our quality assurance systems from ones that posit and evaluate only increased satisfaction with services and supports to ones that reach a much higher standard: the realization, through the use of public dollars and supports, of meaningful lives predicated on universal human aspirations and supported by public policy that sets high expectations for the receipt of public dollars.

This new view of quality starts with re-examining health and safety issues and moves inexorably to universal human needs for friendships and relationships, freedoms common to all citizens, secure economic futures and contribution and community belonging.

A person with a physical disability may need assistance in getting up, dressed and having breakfast each morning. A person receiving behavioral supports may need assistance provided through counseling or peer support. Being satisfied with who provides this assistance and how they provide it are worthy questions and satisfaction-type evaluations adequately get to the answers. But they miss the point and the goal of the self-determination movement, which holds that this is simply not sufficient. Self-Determination is moving to a deeper personal and public policy issue: why get up in the morning at all? In other words why are individuals with disabilities not accorded nor expected to have purposes in life similar to those without disabilities. Virtually everyone else arises to carry out daily responsibilities, work, earn income, plan for life goals, take care of family members, contribute to the common good, exercise citizenship. Until people with disabilities are accorded the same expectations our view of quality will remain severely constrained. It will focus solely on the services. Until the foundation of our benefit and program structures are changed people with disabilities will remain forever impoverished, frequently consigned to unsafe housing, unable to work because of Social Security disincentives and live lives of minimal quality.

Only by positing high expectations and positive outcomes related to certain universal human needs can we ever set a higher standard that also meets the public policy test of quality and cost effectiveness.

The Meaning of the Dignity of Risk

Free men and women take risks. The very notion of freedom implies the possibility of risk. Human service discussions of risk center on issues of health and safety. As if with newfound freedom individuals with disabilities are somehow predisposed to create situations that will jeopardize their well being. Self-determination is not about doing whatever one pleases with public dollars. It is not about creating additional risks to health and safety. In fact it can be argued persuasively that self-determination properly implemented better addresses issues of health and safety. Self-Determination at its core promotes long term committed relationships. Without these relationships individuals with disabilities remain forever in jeopardy. Vulnerable people especially, but not unlike most everyone else, need someone to rely on and in whom they can place their trust.

But self-determination properly implemented does increase risk for individuals with disabilities. It seems important to recognize these risks and even to encourage them. What are they? By addressing universal human needs and desires and aspirations, self-determination poses several risks not usually contemplated by traditional or typical human service systems. By addressing forced impoverishment people with disabilities face the possibility of failure—failure at work or at self-employment. By addressing our connections to our communities people with disabilities face possible rejection. By focusing on the universal human need for friendships and even intimate relationships, self-determination poses the risk of heartbreak.

These are the risks that define us as human beings, make us strong and reflective and carry the promise of true community and family membership. With every one of these risks there is now hope. With assistance individuals with disabilities including those with intellectual and cognitive disabilities need to face the risks associated with membership in the human race. They need to accept responsibility for the exercise of freedom. They need to understand that the dignity of risk is what makes us human. The possibility of hope prevailing outweighs the fear of failure in a system of supports that truly values every person and finally aims to re-capture lives lost.

The dignity of risk then is central to our new understanding of what the support system of the future needs to be-- characterized by high expectations and the risks that all people must take to create lives of high purpose and great meaning.